William Bruce Robb
Striving to be normal
Before beginning my Story, there are two terms, which need to be defined so that readers will know what I'm talking about.
These terms are the following:
I. Traumatic (TBI) or acquired brain injury (ABI).
II. How a society nay define normalcy.
Traumatic brain injury (TBI) and acquired brain injury ( ABI) defined.
Traumatic brain injury (TBI) and acquired brain injury ,(ABI) or a stroke , are two related types of injury that result in unseen damage to the human computer we call the brain.
If massive damage (TBI) to the human computer that we refer to as the human is sustained pre adolescence, as the authors was, then the survivor may not display any of the outward signs of TBI. Lack of visible display of the outward symptoms of TBI does not mean that the recipient did not receive TBI or that they don't have limitations. It only means that the damage and its limitations are not visible to the human eye but rather adequately compensated for. They may be compensated for but they will still are still cause problems especially if the survivor received his injury before rehabilitative help was available or before there was such a thing as special education. Situations such as these were was generally before 1980becuse not before this date was TBI considered as being a disability. Since it was not a disabling condition its survivors generally received no type of professional help either educationally of rehabilitive.
TBI post adolescence is hard to diagnose because it’s diagnosis may require will specialized tests to uncover the survivors deep-rooted, and undiagnosed deficits. These tests are called complete Neuro-psychological evaluations and should be demanded if a child has been diagnosed as having sustained TBI. This should be done immediately because these individuals may be able to compensate so well that their deficits re disguised. They may be disguised, as the authors were, but their disguising does not mean that these individuals do not need specialized help at every stage of their recovery.
A massive insult to the human brain, or ones brain, post adolescence ,can be just as devastating as if it had occurred during birth and left him with a severe case of cerebral palsy. The survivor only appears to have CP but they don’t. However, these survivors, like the pre –adolescent survivor, will require extensive rehabilitation and lifelong supports if they are to gain and maintain employment.
B. What is Normal?
According to Webster, "normal is of the useful type; what is regarded as usual or regular or normal is what is considered the standard for a certain group, type or mode. This definition is simple and straightforward and is useful only if you are referring to individuals who have no infirmities because its connotation is: only those with no limitations are capable of being gainfully employed.
Are all individuals with infirmities incapable of employment? If you believe this then people like Louis Pasteur, Madame Curie' Michael Angelo, Caesar Augustus, Alexander the Great, Napoleon Bonaparte, and Patti Duke never accomplished anything because guess what? Each had some type of infirmity that made them different from the norm, and these limitations were either physical or mental or emotional.
Wouldn't it be a boon to the taxpayers of America, if our disabled could do as well as the above mentioned people who became successful without the benefits of modern medicine? Maybe this coulds happen if America’s disabled didn't have to overcome their disability only to discover that their country may have allowed artificial barriers to be erected whose real function is to them unemployed and dependent upon governmental help. Maybe if America leaders would remove these artificial barriers then they would discover that many disabled individuals would be able to obtain gainful employment and become productive contributing taxpayers.
Later in this paper I will discuss one artificial barrier that needs to be removed. I will show that if it were to be removed that at least 17 groups could benefit in their quest to be considered normal again. If we allow our disabled to become gainfully employed by initiating support at all levels of recovery then we will insure that they do not become dependent upon government assistance.
Striving to be normal
The Beginnings of the Never Ending Journey
How can any story begin without a birthday? Let’s digress to my chronological birthday or to January 17, 1947. For my parents, this was a happy occasion. Little did they know that in eight years our lives would be inexorably changed and ripped apart by a catastrophic event? The event was Traumatic Brain Injury. Bruce was struck by an eighteen-wheel truck and rendered unconscious for nine weeks. You might say that the old I died that day and a new I emerged none weeks later; therefore, you might call January 10, 1956 my rebirth day.
Besides his memory problems, there were other indications that Bruce was much different than he was before the accident. Most of these indicators came from peers who once him their friend. Some completely avoided him while others chose to ridicule him or make him the brunt of malicious jokes. Besides this he discovered that teachers were now treating him differently. If he needed specific help than most likely he would not receive it while others would. In class, he was seldom given an opportunity to answer. When he was allowed to answer and his answer, and it was wrong, he discovered that the incorrect answer was turned into an object of ridicule. Bruce, therefore, learned to open his mouth only if he knew for certain that his answer was correct. This self defense mechanism caused problems because it made others believe that he was outspoken, argumentative, boisterous and that his point of view was the one that counted.
Bruce’s parents didn’t see any of this happening, mainly because they never received professional that would have enabled them to understand what had really happened to him and why h was so different post TBI. They sought help from all agencies, from the federal down to the local, who could have made the educational experience more beneficial not only for Bruce but also enabled them to understand why some of his actions appeared to be bizarre. At every turn they were denied help and the denial was always the same. “Your son wasn’t born with these deficiencies. Therefore, we can’t help.”
With no help in sight, they decided to raise him as if nothing were wrong. They were consumed with making him back into what he had been before the accident. They believed that since he looked normal then he was normal. They believed that all that was needed was for him to return to school and continue his education. Therefore, they had him tutored the summer following his accident. They hoped that this would enable him to reenter Third Grade the fall of 1956. He finished the tutoring and was allowed to return to school that fall.
In 1956 there was no such thing as mainstreaming; therefore, you might say I was a pioneer in this uncharted area. Unfortunately, my reentering the educational system only documented the many hidden deficits, which were caused by the TBI which I sustained in January of 1956. Many of these deficits could have been easier to overcome if I had been given professional help. I was not provided any from federal state or local agencies. The funny thing under Social Security Law our authorshould have received help because his disability occurred prior to age 8. Lack of professional help may have convinced some teachers that I was not capable of learning. Some even gave me the impression that I would be lucky just to finish the Sixth Grade. Junior High, High School and College were therefore, out of my reach. I did graduate from elementary school and then went on to be graduate from High School and eventually from college. So even here I managed to transfer negative input into positive output.
Striving Part II
It is in the fall of 1956, and Bruce has been allowed to return to the Third Grade. Not until the third grade did Bruce realize that he had many deficits, which he previously not had. He soon found them out because most involved memory problems. These deficiencies became evident when he discovered that many simple tasks now proved almost impossible for him to comprehend much less do, and this problem still persists today. If he had not had this burning desire to regain the status of normal then he would most probably have quit. He persevered and is still persevering 51 years later. Quitting was never in his vocabulary, or he would have quit trying long ago.
Memory problems were just the th beginning the indicatord that wre to indicater to Bruce that he was, in fact, very different than he had been before that fateful day in January of 1956. He soon found that his once close friend was avoiding him like the plague, and he discovered that these same friends were now ridiculing him and making him the brunt of malicious jokes. If this was not enough to indicate his difference, Bruce discovered that even teachers were now treating him differently than they did his peers. If any of his critically normal peers needed help, they would receive it personally. If he needed help he did not receive the same type of personal attention. If questions were asked in class he was seldom given an opportunity to answer it. The times he did answer questions were usually turned into ridicule, especially if he answered incorrectly. Because of this he learned to open his mouth only if he knew for sure that he was correct. This caused him to be viewed as being outspoken and boisterous for he began to argue the point into the ground. With all these barriers against him, Bruce resolved to do the best that he could. By doing so he hoped to once again be viewed as normal. This desire was only possible because of the love and support that he received from his parents. They told him that he would be a winner, so long as he did his best. He began to turn negative input into positive output. If he were told that he could not do something, he would resolve to prove that person to be wrong. This winning attitude, coupled with his desire to be normal drove him to realize that he would need more than a high school education if he was to be able to successfully compete with his critically non-disabled counterparts. He held this desire foremost even though he began to feel that he would be fortunate just to graduate from High School let along go to College.
If his parents had not instilled in him the desire to win, then most likely he would have given up and become a High School drop out. He persevered and turned all negative feelings into positive output and graduated on time with his class in 1965.
Striving part III
(Being made disabled, by the because of something, which makes you appear not to be normal.)
In 1968, Bruce realized part of his dream. A university in another state accepted him. Four years later he would graduate with a BS degree in political science and history. Surely, his graduation from college in 1971 would raise him to the level of normalcy. Not so he found that he was now considered disabled not because of TBI but because of a residual which may have caused employers to be leery of hiring me because of the risk factor involved.
Bruce’s entrance into the job market proved futile. He soon discovered that most employers would shy away when they discovered that he could possibly be a risk to their benefit program. Even if he were lucky enough to gain employment, he lost it when the employer discovered that he might be a liability to them. His perceived liability had nothing to do with his TBI but rather with a residual condition, stemming from it, which was, called a controlled seizure disorder or epilepsy. Bruce soon discovered that this condition caused employers to look upon him as a liability to the workplace instead of an asset to them. These problems may have been caused by the application itself. Originally, he had to declare his draft classification, which was 4F. Immediately, all employers, states, federal, and private asked why. He told the truth. He possessed a controlled seizure disorder. The word controlled fell on deaf ears and these prospective employers were never heard from because epilepsy apparently raised insurance fears on all employers even with the advancements in treatment that have been made over the years. Because of this unwarranted perception, Bruce’s entrance into the workforce proved to be a dismal failure. But this dismal failure made Bruce Desire to return to the only place where her could compete fairly with this who was non disabled. That place was in higher education where they are concerned not so much with your inability but rather with your ability. Here also they do not label one as learning disabled because they are not able to function normally in all areas of academics.
Although Bruce desired to return to Graduate School; this attempt was met with another barrier. This barrier proved to be the GRE. He had previously proven that he was capabl3e of doing the course work, but he could not score high enough on this test to be admitted into Graduate School, but he could not score high enough on the GRE because he had not received the proper foundation in either Math or English in elementary or secondary School. Even if he could have overcome this, he had another problem finding funding. Again the state agency that had denied help in 1965 still refused to help.
With efforts to continue his education thwarted, Bruce began to realize that he might never be considered to be Normal. Instead, he would always be considered disabled simply because he possessed a residual limitation called Epilepsy.
Job's applications became more of a problem after the draft was abolished. Employers now asked a barrage of medical questions. An affirmative answer to any could spell death to your employment hopes. One such question was Have you had or do you now have Epilepsy? Again Bruce told the truth even though he knew that he had automatically disqualified himself. Disqualification, because of this question was also true for governmnt employment. An instance of governmental disqualification came in 1971 when he desired to enter the Diplomatic Corps. He was informed that he could not even test because of his seizure disorder.
In 1978 federal fear of Epilepsy would once rear its head. This time it would deny him employment as a volumteer with VISTA- the American branch of the Peace Corps. Everything proceeded normally until they requested a medical and learned of his disorder. Once this negative evidence came to the attention of Officials of VISTA; all job opportunities dried up. It appears to that ever attempt to serve his country has been for naught, since he is ruled to be a risk.
If he is a risk to his government then how can his government expect him not to be a risk to private employers? These may stem from faulty assumptions forced on employers by the insurance industry as well as the government refusal to hire the disabled who posses hidden limitations. However, his government seems bound and determined to hurt ignore their disabled by ignoring their employment problems or by denying them their civil rights.
In 1980 Bruce obtained a Job with the State Department of Labor. He became a social worker in the migrant and farm division. This was CETA employment but he was RIFTED when the Department of Labor lost its contract. He tried repeatedly to get back on with the State but was given no help, although his disability was well documented.
In 1983, Bruce returned to school. This time he went to the National Center for Paralegal training located in Atlanta Georgia. Here he majored In Litigation and Legal Research.
Since 1983, he has tried to find employment in this field but has had no success. Most probably this is because all attorneys are well versed in Workers Comp laws. If one is considered to be a risk by government as well as by his state, then what attorney will hire him even though that individual may possesses the right credentials?
Striving Part IV
More frustration with the system Leads to Creating a Business:
In 1984, Bruce started his own business. He would rather have become part of the establishment if that had been a reality, especially since he had done all that should be required of anyone for such acceptance. Two things were responsible for this. The first was frustration, and the second was the prospect of a new family and the needed extra income. The business started was lawn and landscaping, and it grew so that he began to feel that he would finally become part of the establishment. Then disaster struck. He injured his back in September of 1988 and was told that he could not do this type of manual work again.
Because of his injury and because a lawyer suggested that he do so, he sought help from the same state agency that had been solicited for help by his father in 1955 & 1965. He did this reluctantly because every time he had gone to this agency since graduation from college he had been told that his problems were his own creation, or that he did not want to work.
This time his request was different. He was seeking specific help- brush up courses- that would enable him to use his paralegal training. The attorney who referred him had promised to help him with employment when this additional training was obtained; however, the agency to which he was referred, one with a federal mandate to help the disabled. None of this materialized for this agency again denied him real help. All they offered was to enroll him in their chronic pain program and then tell that he did not want to work.
While enrolled in the chronic pain course Bruce managed to convince a staff psychologist that he had experienced TBI when he was 8. This psychologist then proceed to test him to see if he still possessed residual limitations.
Before beginning the testing, this psychologist noted that there were only sketchy references to the Traumatic brain injury. He further noted that the client supplied all references and that no councilor had ever followed up on them to see if they were actually true. This psychologist noted that all references to traumatic brain appeared to have begun sometime in summer of 1965. This was the exact time that Bruce's father had gone to this agency asking it for help in placing his son at the University of South Carolina.
The test administered by this psychologist revealed that there was enough residual damage to prevent Bruce from becoming capable of holding down employment. For thirty-seven years, this agency had maintained the opposite.
The neuropsychological administered by this psychologist revealed the following deficits which the subject has, which had never been addressed.
• Social and Communication deficiencies
• Bilateral hearing impairment
• Cognitive dysfunction
• Short term memory loss
• Poor abstract reasoning abilities
Each is connected to a particular lobe or hemisphere of one's brain..
Since this test revealed exactly why Bruce had experienced many difficulties in maintaining employment he felt that they would be bound to help him obtain employment. Again this was not so. They still maintained that his employment problems were caused by him not by his residual limitations. This should not have surprised Bruce because they always resorted to this tactic when they were backed into a corner. It always worked because they had the distinction of being the best agency of its type in the nation and the reason for this is their funding method, which is based upon closure- enroll them and close their case as soon as possible than six months later reenroll and so on and so on until they die.
Striving Part V
Denial after denial forces Bruce seeks Government help:
Because this agency had again denied him help, Bruce did something that he never wanted to do. He applied for disability. He filled out all the necessary forms and submitted them. Little did he know that the disability determination division was run by the same agency that had initially refused him help in 1955 and then again, in 1965.
His application for government assistance was again turned down by a state agency mandated to help the disabled. Their denial had nothing to do with his disability-Traumatic Brain Injury. Instead he was too young. Bruce appealed but now was represented by an attorney. This appeal failed. His attorney appealed to an administrative law Judge. This appeal failed also. The j decision, like that of the state agency, appeared to be based upon criteria unrelated to TBI. His attorney appealed to the Appeals Court. Like the other appeals this one also failed but Bruce's attorney persevered and appealed to the District Court. He won this appeal. This was in 1992 some five years after the original application. Finally, Bruce was eligible for government assistance because he had been declared disabled. Help finally came but it was 37-year posts TBI.
The last thing that Bruce wanted to be to be declared disabled. That one word signified that all his achievements had been for nothing. How many people who have not received a Traumatic Brain Injury have done what he has? He is a college graduate, a certified teacher and a certified paralegal. There is one great difference. These people don't have a disorder that may cause an employer to view them to be risks to the workplace or to their insurance plan and Bruce does.
Before he was judicially declared disabled, Bruce was asked to present a speech before a committee that dealt with problems faced by the disabled of his state. He gave his speech and continued to do so for seven years. Today he would be giving speeches before it if it were alive and functioning. A week after giving his first speech, Bruce was given the opportunity to speak before the E.E.O.C. in Charlotte, North Carolina. His speech was on a pending law that has become known as the American's With Disabilities Act. He spoke to Title V.
This Title says that an individual may be written up as an insurance risk for private Insurance. How can a person be considered to be a risk and then Look forward to an employer hiring them?
Bruce pointed this out and the EEOC head attorney agreed with him.
This person further stated that the writers of ADA made a mistake when its writers incorporated insurance language into it. All of this was captured on videotape and has since been sent to Washington. Unfortunately, no Senator or Congressman has attempted to amend or delete Title V.
Every time he spoke Bruce's message was always been the same. His country and state and must do more to insure that qualified people with disabilities are not kept out of the work force because of questionable practices that may prove to be unconstitutional.
In 1989 Congresses did nothing to change Title V, and now it appears hostile to all of ADA. In fact, it may let the entire act be declared to be unconstitutional under the guise of state rights.
Why is this happening to a law that has the potential for helping many disabled? The reasons are simple ADA does nothing to change the status quo. ADA writers failed to allow the employer to look upon the disabled as assets. Instead they allowed us to be viewed to be liabilities under such laws as Workers Compensation. What employer will hire anyone whom they view to be a liability to their business?
Since 1989, Bruce has been trying to change this faulty belief by changing laws that cause the disabled to be viewed as liabilities. His first attempt was to get Title V removed, but now it will have to be to get Insurance laws changed. These very laws may be the reason why so many disabled are considered to be liabilities to prospective employers.
Insurance regulation is a state regulatory issue; therefore, state legislators should be aware of the monetary benefit of insuring that no qualified disabled person can deny employment opportunities because of questionable insurance practices. He has proposed the creation of an insurance classification for citizens with medically controlled disorders or medically cured diseases. In line with this insurance classification, he has shown how it could enable Seventeen groups to become employed without first having to overcome the artificial barrier called -liability.
Striving Part VI
Bruce became an advocate for the disabled.
Advocating for the disabled is nothing new to me. That's right I'm the Bruce, who you have been reading about. I have been advocating now for 46 years or since that fateful day on January 10, 1955. I have been advocating for a type of change that will benefit all disabled people.
However, before the American's with Disability Act no one would listen. Instead they just shrugged me off as a constant complainer. Since its passage, Bruce have been able to become a more efficient advocate for people with disabilities on the state level, as well as the on the National level.
Today, even with ADA under attack, enlightened people listen because they realize that what I advocate will be good for not only the disabled but also for all of America's taxpayers as well as for all of American citizens. Even people from other countries have contacted me and told me to hang in there and fight for the rights of the disabled
What has Bruce done on the state level? He tried to get his state’s civil service system opened up to all disabled citizens instead of just a select few. He went before a state Senator, now a congressional representative, and asked him to sponsor legislation that would place all disabled citizens on an equal footing. He even asked him to have been wording contained in the civil service act changed to read, "All disabled citizens shall receive preferential treatment".
Preferential Treatment was already in the civil service exam but only applied to the disabled military. It meant that extra points would be added to your score if you showed proficiency. It did not mean that employment would be given to you so it should not have been considered to be Affirmative Action. However, to my dismay I learned that the senator who I asked to sponsor this legislation considered preferential treatment to mean Affirmative Action so the legislation died for lack of interest. How can helping a qualified person with a disability be equated with affirmative action? To give the disabled a job, one for which he may not be qualified, is irresponsible. The disabled do not want Jobs simply because they are disabled; they want Jobs because they are qualified.
Because of my advocacy efforts, I was recognized, by a former governor, as a person who is actively trying to make life better for the disabled of his state and his nation. This same Governor made me a gubernatorial appointee to a state agency created to meet the needs of the head and spinal cord injured. In the year 2000, I was also inducted into Whose Who in Business under the heading of Social Service, and several years later I was inducted into the Metropolitan Registry.
On the National level, I have received official invitations to two Presidential inaugurations. These came because of a speech that I sent to a Presidential hopeful. My speeches are also in possession of a former president of the Brain Injury Association, and I have been informed that my ideas have been used to try to change the public perception on disability.
Many of my National Representatives also have copies of my speeches. All have indicated that what I am calling for is a much needed change in the status quo. If this is so then why nothing has has been done to change it? Maybe it is because they have become too comfortable with a stagnant status-quota because changing it might hurt those sacred white cows that contribute to their election chests. Maybe what's being advocated is looked upon as being too Liberal?
Why Survivors of TBI Need Help
I. Parietal Lobes
• Sensory input
• Integration of sensory input to form a single perception
• Body orientation
• Long term Memory
• Sensory discrimination
A. Damage to the left parietal lobe
• Right Left confusion
• Difficulties in writing (Agraphia)
• Mathematical difficulties
• Language difficulties (Aphasia)
• Inability to Perceive objects (Agnosia)
B. Damage to the right lobe
• Body part or space neglect
• Difficulty in making things (Constructional Apraxia) .
• Denial of deficits
• Changes in personality
C. Bilateral to the Parital lobes damage
• Visual motor operations
• Apraxia (the inability to integrate components of a visual scene (sumultanagnosia)
• Optic ataxia
II. Temporal Lobe damage
• Auditory Sensory Perception
• Selective perception
• Visual perception
• Impaired Organization
• Language comprehension
• Impaired Long term Memory
• Altered personality (aggressive rages)
• Altered affective behavior
• Selective attention to visual and auditory input
• Organization of Sensory Input
• Memories of events- Short term memory
• Recall Memory
III. Left temporal Lobe Damage
• Memory of verbal material
IV. Right temporal lobe damage
• Inhibition of language
• Recall of non-verbal material or drawings
V. Occipital Lobe Damage
• Loss of vision
• Image Processing
• Discrimination of movement
• Color Discrimination
• Visual hallucinations
• Writing Impairment(alexia, Agraphia)
VI. Frontal Lobe Damage
• Personality traits
• Motor Functioning
• Problem solving
• Divergent thinking
• Spontaneous language
• Impulse Control
• Social behavior
• Sexual behavior
• Fine Motor skills
• Difficulty in interpreting the environment
• Special Orientation
• Recall Memory
• Self awareness
• Self image
• Decision making
VI-a. Left frontal lobe damages
• Language related movement
• Pseudo depression
VI-b. Right Frontal Lobe Deficits
• Pseudo psychotic
VII. Frontal lobe cortex damage
• Decision making-orbital frontal cortex
• General Decision making
• Impaired reasoning
VIII. Deficits by Hemispheres
A. Right Hemispheric damage
• Impaired language processing
• Slow encoding of spoken word
• Poorlanguagecomprehension-literal meaning only.
• Random thought patterns (Failure to give background information for proper understanding of a concept)
• Failure to follow conversational protocols-
• Failure to Take turns
• dominate the conversation
• Cognition deficiencies
• Attention/Concentration Memory
• Organization Reasoning,
• Problem Solving,
• Left right Orientation,
• Left side neglect,
• Social judgment/pragmatics/impulsivity
• Poor Eye hand coordination
• Holistic learning
• Impaired concentration
• Recall memory
• Visual forms
• Mental rotation
• Figure ground problems
• Somatic sensory deficits
• Processing of visual information
• Impaired reasoning or faulty logic
• Recognition the inability to recognize faces
• Personality problem
1. Lack of seriousness
• Poor fine motor skills
B. Left hemispheric Damage/Lesion
• Speech disorders
3. Syntax problems
4. Motor sequencing problems
5. Central Executive system impairment
a. Logical interpretation of information
b. Interpretation of symbolic language
c. Abstract reasoning
d. Memory of language
IX. Deficits to the cerebral Cortex-
(Executive Center of the Cerebrum)
• Attention deficits
• Peripheral discrimination
• Word formation
• Processing of visual information-
• Conscious memory
• Decision making
• Impaired motivation
X. Deficits by specific parts
• Sensory deficits
• Motor functions
• Altered levels of Consciousness
• Loss of perception
• Spontaneous pain on opposite side of body
• Imbalances in hormones
• Diabetes Insipidus
• Pituitary functions
• Cardiac regulation
• Control center for the autonomic nervous system
XI. Damage to the Cerebellum (Brain stem)
• Involuntary movements
b. Involuntary movements of the eyes
e. Loss of consciousness for a long period of time.